Stand-Out retreat 2017 report



The three-day Stand-Out Retreat/camp had twelve (12) participants (persons with Haemophilia) aged 26years and above, all from Northern parts of the country.

On the first day, participants were given an expectation form to fill out. Details from retrieved forms indicated a general expectation of enhanced knowledge and skills in care and management of complications associated with bleeding disorders.

The retreat focused on achieving six major objectives:

  • Improving patient’s knowledge on care and management of their health.
  • Enhancing patient’s knowledge on management of other health concerns such as HIV/AIDs, Hepatitis etc.
  • Enhancing patient’s knowledge on managing joint complications without factor usage.
  • Building patient skills in networking
  • Empowering patients- enhanced confidence in handling psycho-social issues such as disclosure, sexual and reproductive health, choosing a life partner etc.
  • Patient’s commitment to HFN mission: advocacy, awareness creation-education and fundraising-support.

Facilitators for this event include: a physiotherapist, an orthopaedic surgeons, a haematologist, a nurse and a public health officer.

Topics covered include:

  • Family tree-illustrating the hereditary pattern of bleeding disorders.
  • Joint protection
  • Sexual health and reproduction
  • Common health concerns
  • Importance of physiotherapy
  • Self-infusion
  • HIV and Hepatitis
  • Advocacy and fundraising

Feedbacks obtained from the evaluation forms on the last say from all participants indicated that their needs/expectations were met. Patients gained more ideas on how to manage their health effectively, acquired skills in networking/ relating easily with people, greater confidence in handling sexual health issues, disclosing their condition.

Lastly, participants pledged their commitment to supporting the Foundation through advocacy and fund generation with a proposed plan of establishing a car wash in two major cities (Kaduna and Abuja).  This effort will contribute to awareness creation, enhanced care and treatment for persons with bleeding disorders through research and continuous advocacy.

In general, participants found the retreat arrangement in terms of location, accommodation, feeding, program date/time very satisfactory. Overall, 83.3% of participants rated the camp as excellent while 16.7% rated it as good and look forward to more retreats.

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